Oh wow I really hear that! It really is a big deal. The year after treatment for me was very difficult and I wanted to scream from my gut for what the treatment had taken from me. Then I felt such shame because I was 'cancer free'. How could I be so ungrateful. I'm alive. It is what it is. As well as Hodgkin's I have had Vulvar cancer and many operations to take parts of me away, so I imagine your Gyno cancer treatment was quite invasive and affected all that being a woman can mean for you. Its hard for people to understand. There is loss, bereavement, shock, and most of all, we now know that life can be taken from us at any moment. I used to look at people in the street talking and laughing, looking at clothes in shop windows, having lunch and thinking "I remember that. Death was something that comes much later. Getting up each day and just planning what needs to be done and then with one massive jolt - none of it matters any more". You can't 'unknow' something that we now know. Its there for keeps. The innocent daily expectation of being there the next day and the next Christmas or the next birthday is over. Nothing is certain any more. its very scary. Of course your life is different now Grace. How could it be any different. You have been through something huge. It will take time to grieve and to feel you can trust life again. Its hard when others feel they need to take the grief from you because they want to move on from the fear, but that is their work to do. We can only be where we are and do the best we can every day, Warm wishes Karina
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Elle, firstly I'm just so sad to hear your story. What a lot for a young couple to deal with. So many "ifs" about what the future holds whilst dealing with immense fear and sadness. I truly am so sorry.
What you express about what its like for you is so powerful and very common for people not directly experiencing the cancer but are still jolted and affected by its consequences, both for their loved one and their lives. There is no entitlement about who can be the sad one and who has no right to be sad. Cancer affects every single soul that loves someone who has it as well as those who have it. I remember when I was diagnosed, I sat with my three adult daughters and said, "We're going to need to be real to survive this. There will be times it gets too much for you and you'll be angry, frustrated, just need to walk away. There is no wrong. We will all do what we need to do to survive. That way, I can feel free to get angry, be frustrated and walk away". It was a very important part of our coping with 8 really hard months of fortnightly treatments that nearly killed me on one occasion when I had pneumonia. So just remember, you feel what you feel. Its never wrong. You 'shouldn't' feel anything specifically. And I think if you feel you can share your fear and frustration with your husband, then he will feel free not to be so brave and let go and be exactly however he feels at that moment. Having to pretend to be okay when we're not is a lot like how we feel when others expect us to be back to normal and we're not. It is what it is, and the healthiest place for us to be - and the place that gives us the endurance to last the distance - is to be exactly as we feel. Love Karina
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One of the hardest parts of recovery or cancer itself is what others do with their own discomfort around our illness. Its difficult for them so they say things that are not always helpful. They want it to be over so once the treatment has ended, feel they can let go of their worry and tell you you are okay. There is never the same normal for those in or post treatment. The treatment given has an agenda quite separate from the cancer itself. It crushes the cancer and crushes a part of us both physically and emotionally. Its really so true, 'you can't know unless you know'. All I could share and offer you is there is certainly a new normal for us. And that is absolutely fine. Only we can really understand the battle we fight or have fought. I'm sorry you have experienced others expecting you to be fine. Its painful. I guess I wanted to say "have you any idea what I've experienced and lived through" - "how could I ever be the same me". It doesn't mean the new me is any less, but there is no doubt we are all irreversibly altered by this experience. Warm regards, Karina
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So nice to hear from you. I'm really sad to hear of your struggles and of the fear you must be living with. How old are you Maggie? I'm not sure if a group like ours exists in Melbourne as it is something we devised purely because of my involvement in that world. To be honest it has been difficult to even get the word out there to those suffering like you who live in Sydney who need this kind of support.
I'm happy to chat to you though at any time about what you are experiencing via this site as I know how important it is to be able to speak with others who get it.
Tell me about your treatment and what life is like for you if that is something that feels comfortable. I'd really be interested in the feelings you are going through and the challenges you face. It can be a very lonely place. Because of the hours I work, online chat is probably the most reliable way, but I will always be happy to receive your emails. Warm regards, Karina
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Hi GHT, I was so moved by your response to my blog. It really is a knowing and we are unable to 'unknow' once having suffered from cancer. And more even than that. Surviving the treatments that sometimes can feel worse than the illness. Its so nice to connect with you,
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Having lived through a long and savage chemotherapy regimen as recently as just eight months ago, I often find myself reflecting on what this has taught me. From the moment my legs buckled under me at being told my diagnosis, it has seemed imperative to me that it held a lesson. This surreal journey into such a frightening disease and its treatment had to have some other meaning, outside “just one of those things”.
So what was the secret that I needed to learn here? Vulnerability? Impermanence? How would I be remembered? So many thoughts and feelings of what it could be swirled around my mind during those long 8 months of treatment. I prayed that over time the lessons would become apparent. Now, 8 months on, as I try to carry on with my old life as if it had not been suspended, as if I was the same me, I have many moments that I stop and tap into myself, and notice what comes up for me. What have I learned? One pervading feeling that mostly occupies my mind and heart these days is the separateness of cancer patients undergoing treatment. The seemingly parallel path to the rest of the world that exists from the moment of diagnosis, to the time that treatment spits them out at the other end. This separateness for me had two faces, both of which had something to teach me.
One is an obvious physical separateness whereby each chemo treatment for those who suffered as I did, sees them in bed for 10 days out of 14 and the remaining 4 are spent in frailty not allowing much interaction with the outside world. Noises outside the bedroom window echo sounds of life, laughter, traffic, exhibiting so plainly the unknowing that those like me, were suffering. It told me that the hugeness of my struggle didn’t stop life going on. It was a painful realization but it taught me something to hold in my work as a therapist and more broadly as a human being … that on my best day it is someone’s worst, and on my worst, someone’s best. So in order for those days of struggle to have meaning, I needed to remember that whatever kind of day I now experience, there is always someone experiencing the opposite; and even though they are strangers to me, I want to stop and think of them so it matters.
The second is the loss of one’s physical self. For me it was bloating, baldness, skin sores and paleness. Where once I was met with smiles and hellos, I became invisible. Sales people, strangers, fellow pedestrians, looked away from me. Whether it was because of shock or just my lack of relevance to the aesthetic world, for me it was palpable and sad. Not sad as much as you may expect because I was not seen. But sadder because I wondered for how long in my life had I treated others as invisible when it was difficult to look, when it challenged my sense of aesthetic normalcy. Had I? Sadly, I think I recognized this in myself.
It occurred to me I had ironically chosen a profession where I valued a lack of judgment of people’s psychological selves as part of my role as a therapist, but how had I translated this into making sure I saw all physical carriages as relevant in my day to day life and not just in my life philosophy? I’m not sure.
My own experience of invisibility reminded me that everyone’s heart beats the same, everyone has the same need for acknowledgment of their physicality, to be loved and thought of as a relevant part of others interactions and lives. I try so hard to “see” more today. To really be mindful of those around me, and when I feel myself wanting to look away, pull my eyes back and try and smile. It seems so little to do, but so important to those who have felt that absence, as I did.
So looking back on “just one of those things”, the fear of that very scary disease and my ongoing terror of it ever returning, I’m grateful I can glean the gifts amongst all the weeds. Hopefully these lessons will serve to help me be a finer therapist and a more mindful and compassionate human being.
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Hi AJ, my heart broke as I read your story. That hole that is left by losing a loved one is so very hard enough without the suffering caused by cancer in the process of them going. I lost my Dad to stomach cancer which went everywhere in the end and in three months he was gone. Its painful, heart searing and something once seen hard unsee in our mind. I'm so sorry you have had to go through this. Talking as you have on this site is meaningful, not only for you but for those of us who also have travelled a similar path. I really hope life becomes gentler for you and my heart is with you.
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Hi everyone, I'm Karina and I'm a survivor of both Vulvar cancer and Stage 4 Hodgkins with 8 months of chemo. I finished chemo last year and have had struggles with post chemo consequences and how emotionally one goes on after the trauma of what cancer and its treatment can do. There are two reasons I joined this group. One is that I needed to blog and chat to others about all the feelings coming up for me post cancer, and of course the fear of yet another cancer visiting me. I know how important letting all these feelings out is. And secondly, I'm a therapist dealing with depression and anxiety and in my work I run groups for free for those who are survivors and are struggling with life after cancer. so there is no financial benefit to me in suggesting if anyone would like to join one of these in the Bondi area. I run them for free because I need for people to chat and learn and grow and be supported in their very unique type of trauma and sadness. So in either way, I am happy to be a part of this group, if only for my own healing. It will be nice to belong here and hear your stories.
Warm wishes Karina,
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Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.